Mum has dementia

Registered User

My mum is 64 years old and has had signs of dementia for about the last 4-5 years. I currently live with her and my dad who is 70.

She used to work in the care proffession as an OT and was probably aware of it but has been in severe denial. If it was mentioned we would be shot down with a verbal volley.

Earlier this year, it became more severe. The same questions became me frequent and my dad and I became more frustrated.

Although my mum would not admit to a doctor that there was a problem, I decided to inform the doctor without her knowing. The doctor was fantastic and was able to initiate the tests that my mum has recently gone through.

In retrospect I wish I had done this earlier on and would highly recommend this course of action for anyone who is struggling to get the person involved to admit to the problem.

My mum had the tests. Short term memory loss was evident. Dates in particular.

It was reassuring for my dad and myself as mum had drilled down our opinion in the way she denied there was a problem.

The doctor prescribed her 1 Aricept a day.

After 10 days or so it felt like she had made an improvement, remembering dates and general short term points.

It has now been close to a month and my hopes have been dashed. She is more forgetful. She talks of things from 30-40 years ago as they are relevant events that have just happened. That is her here and now.

My dad is away at present so I have lost a great support for 2 weeks. This has added further pressure on to me and I am starting to feel down and have come on here just to get it off my chest and feel reassured, appreciating that i will need some help and advice.

Today she has asked me at least 50 times where my dad is (he is currently looking after his mum, who is usually looked after by my uncle, who is on holiday).

Appointments at the doctors are also an issue. I have written on a piece of paper marking todays date and when the next appointment is.

I am self employed and have taken a few days off of late to look after her. Part of this is through concern, but also I am begining to apprecite what time I have left with my mum. Also my motivation is falling.

Financially this isnt a problem as I have some savings behind me and as mentioned, I live at home, but I am letting down customers which makes me feel guilty. I am in the process of letting them know so that they will understand if I don't turn up as regularly. I have c.80-90 customers a day so phoning all each day would be a problem, but i will post them a brief slip to help explain my absence when I next go.

I am looking to employ someone to take care of the day to day aspect of the business. This also concerns me as once I do this, I will be with my mum full time and I am giving up a chance to get some space from my mum.

In terms of myself, I am 32 in 2 weeks time. I am single and live with my parents. As mentioned before I m self employed.

I use forums and the internet for all sorts of things and knew there would be a good community to join and have a feeling this is it

Registered User

I'm also new here but from what I've experienced so far, you have certainly chosen the right site. People are real here. There's no other way to describe them. They are all caring for or involved with or have various forms of Dementia's, including Alzheimers and they don't hold back on topic matter, discussions or advice. They are as gentle and reassuring in their replies as they can be and generally I think they are a wholesome, lovely bunch.

Registered User

I think I have started to come to realise that things are set to get worse over the next few years.

I have read a few of the factsheets and they have tons of good advice.

One thing that concerns me is, if anything was to happen to my dad I would be full time with my mum without respite. It loks as though I can get help, like a sitter to help out if I fancied a night out or w/e away? Not that I do that often as my 20's are well behind me, but i'd still like some time for myself.

Registered User

Dear Mike,
Welcome to Talking Point.
I am so sorry to read about your Mum but you have come to the right place for great support, friendship, advice, and help that can be given.
Although we are coping in different ways we all come together.
Laugh, cry together. We are all travelling the same path.
In no time at all you will think you have been on Talking Point for ages.
Best wishes
Christine
p.s. Please don't go down the guilt trip and remember any help you can get as you also have a life and that is not being selfish.

Registered User

Welcome to TP Mike. I hope you find us useful. I can totally relate to what you are saying about being self employed. When mom got to the point where she had to have someone full time around I was working for a wonderful company in management and had a small business that was considered retail.

The corporation I work for let me "leave" indefinitely as all my work is done over the computer and on the phone. I was lucky in the sense that they felt I could be utilized in human resources from at home. Mind you that is not what I was doing when I told them the news. I had been in the process of "training" for proper retail and customer service.

My own company had approximately 30 clients who I helped organize fundraisers for. When mom got to that point I wrote a very proper let and told them that my business would be changing and going totally internet based. I set up catalogs that could be sent to the clients and arranged for them to use me if needed. I expected that I probably would have to close my doors, but by grace I have been lucky that the business has grown. I tell my new clients up front how it is and I have made myself very accessable. For the most part some of my new clients were skeptics at first, but those that were referred by my better customers knew what they were getting. Don't despair that your job may have to take hold, I seriously do not recommend that..as the mental aspect is very hard. I don't know what your business is, but I am sure that you will be able to put it into a more hospitable role to you as you take on this endeavor.

Feel free to use us as bouncing boards on those hard days and good luck to you and your dad.

Registered User

As mentioned we all have our differences in our situations but also there will be people with similarities.

My business will be ok (fingers crossed). All I need to do is to employ someone to do the day to day running and get a few more customers to cover the costs.

The company is a wheelie bin cleaning company and we have just been given bins in my town so that will help build the base I need to cover costs. I guess its just that worry over it all but I need to be strong and just do it.

Registered User

Hi Mike
Welcome to TP. I'm sorry to hear about your mum. It's very difficult to balance your life once you are in this situation. There is no right and wrong, as long as you do your best to ensure your mum gets the best care that is possible. You cannot underestimate how diffcult it is to live with someome with dementia all day every day, particularly as the illness progresses. I would advise keeping your own life operating as much as you can, looking for ways to support your mum (and dad, as he is going to need huge support too), by exploring all the options. Contact social services, talk to your mum's GP about referral to a CPN (community psychiatric nurse), get in touch with Admiralty nurses and the local Alzheimer's society. Get all the help you can so that you can maintain at least some of your professional and social life. You will be better able to manage the difficulties ahead if you have other support systems in place and retain some time for your own life. Just my personal view from my own experience.
Keep posting - there's so much support here.
Blue sea

Registered User

Welcome to Talking Point (TP). In my opinion this is out-&-out THE most informative and helpful place to come when you need to find hands-on experience, advice, sympathy, empathy, suggestions & actual true understanding of what it's like to live & cope with dementia.

Mike said:

She talks of things from 30-40 years ago as they are relevant events that have just happened. That is her here and now.

You already have a deep & sensitive understanding of what life has become for your Mum. Sometimes it takes a long time to work out or accept what's happening, which is a crucial step for any family carer. Being able to 'enter their world' & comprehend that some of the time their reality is different to ours is so difficult, but so essential, as our loved ones struggle to make sense of trying to cope with both at once.

Please, before making any huge life-changing decisions about your own life, DO follow up on the suggestions already offered to find out what outside help may be available in your area. And of course your Father has to be involved in discussions & decisions about what assistance will be acceptable to you both.
As regards your business, you said

Mike said:

I am looking to employ someone to take care of the day to day aspect of the business. This also concerns me as once I do this, I will be with my mum full time and I am giving up a chance to get some space from my mum.

I think you are very wise to look ahead in this way. Being committed to & confined with a loved one with dementia 24/7 IS very isolating & restrictive - and (even if you're not a teenage raver) everyone needs a certain amount of personal 'space' & social contact with the world outside. I took redundancy 2 years ago to look after Mum, who was living on her own, and am really feeling the strain now - and my Mum doesn't even have any particularly challenging quirks or behaviours cool:yet).

My local Alzheimer's Society branch has been very helpful, as has an organization called "Suffolk Family Carers" (I don't know if they are widespread across all counties). They are not an agency, but provide support & advice to family carers. Age Concern are also very well organised - they don't just run Charity shops.

I know you said that money wasn't a particular problem, but does anyone in the household get Carer's Allowance, or have you considered applying for Attendance Allowance on Mum's behalf now that she has a diagnosis? We (you/your Dad/your Mum/me/all of us) have paid for these things by our Tax & N.I. payments, now it's payback time - don't ignore your Mum's entitlements. A.A. may entitle you (the family) to a reduction on Council Tax payments. Once you've jumped through the hoops on the A.A. form, you may find that - if successful - it opens doors to other types of practical assistance. Age Concern have an advice service to help with these sort of things & your Dad would 'qualify' for their help by virtue of his age.

And remember, the situation will be changing as time goes on. Your Dad won't be getting any younger (Duh? really?) and the emotional stress you will be feeling will put years on you too.

I live with her and my dad who is 70 ... (he is currently looking after his mum, who is usually looked after by my uncle, who is on holiday)